Karen Kopp and her husband, Bob, of Kansas City, Mo., participate in the Pancreatic Cancer Action Network's inaugural PurpleStride 5K event last spring in Leawood. They were among 1,100 people who participated in the event, which raised $100,000 for research and to help support patients and their caregivers. Karen Kopp was diagnosed with cancer in 2009 and is currently battling the disease for the third time.
Karen Kopp says she’s lucky to be alive.
“I’m not sure how I’ve made it this long to be perfectly honest,” she said during a telephone interview from her Kansas City, Mo., home.
In 2009, Kopp was diagnosed with pancreatic cancer, which is described by oncologists as the ugliest of all cancers because it’s often discovered in late stages and there are few treatment options. Seventy-four percent of patients die within the first year of diagnosis. The five-year survival rate is 6 percent.
“It’s one of the hardest diseases that we see and treat as far as finding a cure and having people do well with chemotherapy for long-term survival,” said Dr. Michelle Affield of Lawrence Memorial Hospital’s Oncology Center. “The survival rates haven’t changed for a long time for pancreatic cancer while other cancers are making better progress.”
She said the best chance for a cure is surgery, but the cancer has to be caught early before moving outside the pancreas. If surgery is not an option, then doctors typically prescribe chemotherapy and radiation treatments . Affield said the symptoms typically do not show up until the disease has progressed, and a classic one is jaundice or a yellowish color of the skin. Sometimes, there are vague symptoms that are thought to be indigestion or abdominal pains.
That’s how Kopp says she got lucky. She was suffering pain and thought it might be a gallbladder problem. She also had lost weight due to a lack of appetite but had attributed that to stress.
A gastroenterologist ran a test and found the mass on her pancreas. She was referred to a Kansas City oncologist who didn’t give her much hope. She decided to get a second opinion at Memorial Sloan-Kettering Cancer Center in New York City, where she is originally from. That doctor was more optimistic and so she decided to have surgery there. They took out two-thirds of her pancreas and the lymph nodes surrounding it. Out of 20 lymph nodes, only one had cancer cells in it.
“I came out very, very lucky,” she said. She had seven months of chemotherapy and then was in remission. She went back to work as a technical nurse in a Kansas City hospital.
In December 2010, the cancer returned. She had four months of chemotherapy followed by three months of a combination of radiation treatments and chemotherapy. Following the treatments, a test showed no tumors and she was told once again last summer that she was in remission.
“Everything looked good. My doctors thought it was over,” she said. But in November, the cancer was back and worse than ever.
“I couldn’t handle it anymore. I just wanted to end my life,” she said. Her oncologist suggested seeing a neurologist and he suggested a pain pump that would provide medication 24/7. She had one implanted on Dec. 2, and Kopp said the surgery was very difficult but now she’s pain free.
“That has made a huge difference in my life, being able to focus and stay optimistic and be as active as I possibly can. It made a world of difference,” she said.
She’s undergoing chemotherapy treatments and taking life one day at a time. She’s found help through the Pancreatic Cancer Action Network’s Kansas City affiliate, which raises awareness about the disease and money for research. It also provides resources for patients and families.
“It gives me a focus on trying to raise enough money so we can take this disease off the bottom of the list of people that survive. We need more funding for research so perhaps it can get diagnosed earlier,” she said.
Kopp was among 1,100 people who participated in the network’s inaugural PurpleStride 5K event last spring and it raised $100,000. She also shared her story during the event to provide hope for other survivors.
“My faith is really what has gotten me through a lot of this,” she said. “God saved me, so shame on me if I didn’t do something to help someone else.”
Karen Kopp, of Kansas City, Mo., a pancreatic cancer survivor, speaks during the inaugural PurpleStride 5K event last spring in Leawood. She was among 1,100 people who participated in the Pancreatic Cancer Action Network event which raised $100,000 for research and to help support patients and their caregivers. This year's event will be April 21 in Overland Park.
CREATING HOPE
The Pancreatic Cancer Action Network is a nonprofit advocacy organization that was founded in 1999. It’s mission is to advance research, support patients, and create hope for those affected by pancreatic cancer.
The Kansas City affiliate has two main fundraisers each year:
• PurpleStride 5k run/walk event in April. This year’s event is April 21 in Overland Park.
• Night of Hope, an event that includes a dinner and silent and live auctions, in November.
To learn more, visit pancan.org/kansascity or call 877-272-6226.
Comments
Marilyn_Hull (Marilyn Hull) says…
Great story.
Why is it that second opinions so often yield a different prognosis? It seems I hear more and more stories of people who seek second and third opinions and get pretty different advice.I would love to here how the doctors at LMH would respond to this question. Karrey, maybe a story idea?
kbritt (Karrey Britt) replies…
Thanks for the idea. ... I think the decision really comes down to the patient. I've learned through reporting and talking to others that when it comes to health care — you really have to advocate for yourself or your loved one. Making decisions about whether to get treatments, surgeries or second opinions is super tough and is so difficult. When it came to my hip replacement surgeries, it was the most difficult part of the whole process. I went through two doctors before getting a diagnosis from the third. Then, it was ... do I get a second opinion? Do I pay for more tests, more office visits, travel, time off from work? For me, I decided to go with that doctor's recommendation and so far, it has worked out. By far, the decision-making process was the most difficult. Anybody else want to weigh in?
AllHeart (Michelle Derusseau) says…
I think on such important matters it is always best to seek out a second or third opinion. You need to know all of your options and Doctors are just like anybody else, they have their opinions, their specialties and differing approaches (i.e. more aggressive or not). I also think a patient must be comfortable with the treatment option and the doctor in order to have the best chance at a successful outcome.
AllHeart (Michelle Derusseau) says…
Karen, you are an inspiration! Keep up the good fight.
wissmo (anonymous) says…
Thank God Karen, what a horrid disease. Live long! My mom passed with this monster. Reduced a proud women into an embarrased shadow of herself.
kansasplains1 (Lawrence Morgan) says…
I really honor Karen. I had a friend several years ago from Lawrence who went through this and he didn't survive.
The last sentence of the article says everything, “My faith is really what has gotten me through a lot of this,” she said. “God saved me, so shame on me if I didn’t do something to help someone else.”
Keep on going, and continue to help others. It's when people live isolated lives, unable to reach out and have friends help them, as they help others in return, that any kind of disease becomes far worse.
Good friends, as well as second and third opinions from doctors, help out a great deal. But most important is helping others. It takes much of the burden off yourself and in the process of helping others, you also help yourself!
labmonkey (anonymous) says…
Pancreatic cancer survivor is almost an oxymoron. Good job and I hope you have many great years ahead.
KS (anonymous) says…
I lost my sister to pancreatic cancer. She went thru hell the last few months of her life. This cancer is nasty. I wish Karen the best. So far, she seems to be beating the odds.
kbritt (Karrey Britt) says…
Here's an email that I received from Bob Klem about an upcoming fundraiser: My daughters and I started the "Have A Skate With Bob Foundation" 5 years ago in memory of my first wife, who passed away from pancreatic cancer.
We hold benefit hockey games in Becky’s memory, with all the proceeds going to pancreatic cancer research, and will be holding a game on March 17 in conjunction with the Missouri Mavericks CHL team. 100 percent of our proceeds are donated to PanCAN in Becky’s name.
If you’d like to know more, please visit our websites at www.skatewithbob.com or mm.skatewithbob.com.
CharlotteGarrett (anonymous) says…
At present, the federal government has no comprehensive research strategy to combat pancreatic cancer, and dedicates very little funding to the disease. Pancreatic Cancer Action Network, the national organization creating hope through research, patient support, community outreach, and advocacy for a cure, has introduced landmark legislation, the Pancreatic Cancer Research & Education Act S362/HR733, that will direct the NCI to develop & fund a long-term comprehensive research strategy for developing early diagnosis and better treatment options. Go the the PanCan website www.knowitfightitendit.org and send a message to your elected officials, They need to co-sponsor this bill - they need to vote yes - it needs to be passed!
Join our local affiliate www.pancan.org/kansascity. Come to PurpleStride Kansas City April 21st! Be the voice for those that we've lost. Help make a difference! For questions, email CGarrett@pancanvolunteer.org
Karen - we love you!